What do Family Caregivers Want? Payment for Providing Care

ABSTRACT Although the primary goal of self-directed programs providing long term services and supports (LTSS) is to maximize choice and control for service recipients, such programs may also benefit family caregivers by compensating them for providing supportive services. This study draws on qualitative data from research supporting the RAISE Family Caregiver Advisory Council, finding that family caregivers themselves see the expansion of self-directed programs as a policy priority due to their need for financial security. The request for compensation was the strongest finding, with respondents highlighting the incompatibility of work with caregiving and their inability to rely on the existing paid workforce due to supply and quality issues; the consequences of this loss of earned income were reported as severe. Ultimately, respondents saw payment for providing care as an issue of fairness. This evidence supports the policy case for expanding access to self-directed programs that permit the employment of family caregivers.


Introduction
Family caregivers play an important role in providing supportive care to older adults with functional or cognitive impairments.It is estimated that roughly three-quarters of the care received by non-institutionalized older persons is provided by unpaid caregivers (Spillman et al., 2014), typically family members.These include tasks such as helping people with dressing, bathing, or mobility, as well as preparing meals, managing medications, and bill-paying.Taking on the role of "family caregiver" significantly affects the lives of caregivers -much has been written about the psychosocial and health consequences of being a caregiver (National Academies of Sciences, E. and M, 2016).This paper, however, focuses on the financial challenges faced by family caregivers providing personal care to functionally or cognitively impaired relatives.It discusses the merits of policies that pay family caregivers for providing care, using data from research with family caregivers to underline the extent to which family caregivers themselves support such policies.
Programs that reimburse caregivers for providing care are well-established here in the US, but are limited in scope.The option to pay family members is primarily available under programs offering "self-directed services" -that is, programs that enable people receiving publicly-funded long term services and supports (LTSS) to hire their own service providers (rather than use service providers from a home health agency or other entity).However, not all selfdirected programs allow family members to be paid, and those that do often limit the types of family members who can be paid.
Self-directed programs are generally available only through states' Medicaid programs (typically via home-and community-based service (HCBS) waiver options) and Department of Veterans Affairs' Veteran-Directed Care programs.As of 2019, nearly all state Medicaid programs offer this option (serving over 1,200,000 people, nearly half of whom are in California (Ujvari et al., 2020).However, across all states with self-directed programs, many have caps on enrollment and significant waiting lists, preventing them from offering this option to everyone who would want it.The programs also differ in how they operate.Of the 267 programs offering self-directed services, 123 enable participants to hire any family member, while 144 have restrictions on who can be hired; of these, 122 prohibit spouses from being hired, 110 prohibit legal guardians, 107 prohibit parents, and 6 prohibit adult children (Ujvari et al., 2020).The private sector has also embraced self-direction: while the vast majority of people who need LTSS do not have private long term care insurance, many who do benefit from policies providing a "self-directed"" or cash benefit either in whole or in part (Tell, 2011).
Because the primary goal of self-directed programs is to serve program participants, the impacts of such programs on family caregivers have, quite appropriately, received less attention.In large part, this is because access to self-directed services has been so hard-won by disability activists, who have fought to be recognized as experts in their own needs and for the right to control the services they receive, with interests that may be distinct from the family members with whom their lives are so closely entwined.
Thus, most of the research addressing self-directed programs has examined the benefits for service recipients -establishing that they report more flexibility and control, greater satisfaction with overall quality of life, and no negative health outcomes or increased health costs (Benjamin et al., 2000;Carlson et al., 2007;Wiener et al., 2007;Yuan et al., 2019) -as well as the cost implications of these programs (Dale & Brown, 2007).Assessment of outcomes for family caregivers has been more limited and has tended to focus on various measures of psychosocial health, such as caregiver burden or stress (Milliken et al., 2016;Simon-Rusinowitz et al., 2010).The extent to which such programs address the often-precarious financial circumstances of family members does not appear to have been studied, although Foster et al. (2007) did find that "financial strain" was reduced among family caregivers of participants in the Cash and Counseling Demonstration and Evaluation, one model of self-direction.Attention to the impacts of both paid and unpaid caregiving on family caregivers is consistent with the paradigm shift toward patient-and family-centered care within health and LTSS systems (National Academies of Sciences, E. and M, 2016).
A considerable body of research does, however, definitively establish that taking on the caregiver role substantially damages a caregiver's financial situation, both immediately and over the longer term (Keating et al., 2014;National Academies of Sciences, E. and M, 2016;Skufca & Rainville, 2021).Among family caregivers of older adults, 36% report moderate to high financial strain (AARP, 2015) and, on average, spend about a quarter (26%) of their income on caregiving activities (Skufca & Rainville, 2021).Caregivers -particularly those providing a high level of care -often need to cease working, which not only eliminates their income and results in the loss of health insurance benefits, but also reduces their ability to save for retirement and build up entitlement for Social Security benefits (Clancy et al., 2019;Lee et al., 2015).Among those who work, more than half (53%) have experienced at least one work-related impact (having to take leave, for example) due to caregiving (Skufca & Rainville, 2021).
Consequently, this paper focuses on how self-directed programs -which enable family caregivers who are unable to work to continue earning a minimal level of income -can benefit family caregivers.This insight arises out of research conducted for the RAISE Family Caregiving Advisory Council (the Council), which has established that family caregivers themselves identify the expansion of self-directed programs as a policy priority.Indeed, one of the top demands identified in the research was that family caregivers be paid to provide care.
This research is one part of the research team's work supporting the RAISE Family Caregiver Advisory Council, which was created under the Recognize, Assist, Include, Support, and Engage (RAISE) Family Caregivers Act (2018).Under the Act, the Council is directed to support the Secretary of Health and Human Services in developing a national family caregiving strategy, which should be released in the summer of 2022 and contain recommendations regarding specific actions that can be taken by a range of key stakeholders, including the federal government, states, community-based organizations, health and LTSS systems, and employers.To inform this work, the Council commissioned research to understand family caregivers' perspectives on their priorities, as well as their recommendations for policy change.These findings fed into the Council's formal recommendations, submitted to Congress on September 22, 2021(RAISE Family Caregiver Advisory Council, 2021).One of the Council's five stated goals is Goal 4: that family caregivers' lifetime financial and employment security is protected and enhanced.This goal is supported by Recommendation 4.1: Decrease the negative financial impacts for family caregivers on both a short-and long-term basis.

Data
Data for the research that supported the Council's work derive from two sources.The first stage of the research analyzed open-ended responses to a Request for Information (RFI) from the Administration for Community Living (ACL).The RFI, which was widely publicized, was published in the Federal Register (Vol. 84,No. 236) on December 9, 2019; the opportunity to respond closed on February 7, 2020.Information about respondents was limited to a response item enabling respondents to identify their organizational affiliation, which enabled us to distinguish the 1,147 responses from individual family caregivers from the total 1,613 responses, with the remaining responses from organizations that serve and support family caregivers.The RFI also included two open-ended questions where respondents were asked to describe "A pressing family caregiving need/ concern I would like to see addressed" and to "offer this specific recommendation to address my need/ concern."Respondents represented the full range of caregiving relationshipsnot just caregivers of older adults.An overview of the RFI findings was published as Nadash et al., 2021.The second stage of the research involved 12 focus groups conducted remotely (via Zoom) from July 2020 through September 2020, building on findings from the RFI analysis.Rather than focus on caregiver needs, which are well-researched, the focus groups aimed to ensure that an intentionally diverse group of caregivers could react to and build on the policy recommendations and priorities elicited from the RFI analysis in a systematic and structured way, thus enhancing the credibility of the RFI findings.Accordingly, participants were guided through a structured discussion of the RFI findings and asked for their reactions, suggestions, and priorities for policy action.The remote modality was chosen because it facilitated participation by family caregivers (who can find it difficult to leave their homes) as well as by participants from a range of geographic locations -a serendipitous choice, given the subsequent COVID-19 pandemic.
The first four groups covered the two clusters of issues that had been identified as important to family caregivers, based on the RFI analysis findings: long term services and supports (LTSS) and the financial and workplace impacts of caregiving.Two of these four groups involved parents of children (both minors and adults) with LTSS needs, while the other two involved caregivers of different types of adults with support needs, predominantly older adults.Five more groups focused exclusively on either LTSS needs or on financial and workplaces issues (again, split into parents and other types of caregivers).Three additional groups focused on specific populations: youth caregivers (high school age), Hispanic caregivers (conducted in Spanish), and kinship families (including grandparents raising grandchildren as well as other familial configurations).These "special population" groups covered both sets of issues, as relevant to that population.Where possible, we clustered participants by income.
Participants for the first nine groups were recruited using Focus Pointe Global (FPG) (now rebranded as Schlesinger Group), a full-service research firm, using screening tools that ensured diversity on key characteristics (including race, ethnicity, income, relationship, and care recipient characteristics) among respondents (see Appendix A for the screening tool used for the first 9 focus groups).Moreover, due to concern that participant characteristics might be skewed due to poor access to technology, FPG was tasked to ensure that recruited participants had (and were able to use) technology enabling remote participation.This involved shipping technology to participants who lacked it and engaging them in a walk-through of how to use it, thus ensuring that those with little experience of technology could participate.Participants in the latter three focus groups were recruited by organizations supporting each population.The research was approved by the University of Massachusetts Boston IRB #2020148.

Analysis
An initial analysis of the RFI responses applied thematic analysis to identify the key concerns and recommendations, beginning with open coding motivated by a grounded approach (Glaser & Strauss, 1967) taking a semantic approach rather than looking for latent meanings -our focus was what the respondents themselves identified as key issues (Braun & Clarke, 2006).The process began with two researchers (researcher 1 and researcher 3) independently reviewing a subset of 400 responses and developing codes to capture recurring themes seen in the data to develop an initial coding tree, identifying relationships among codes.They then used an iterative combination of handcoding and the auto-code feature in NVivo 12 (the qualitative analysis software used in the study) to code data from the 1,613 responses to the two openended questions from the RFI, meeting frequently to reconcile and update the coding tree, adding new codes where necessary.The emergent categories revealed a wide range of themes that were then used to shape the discussion guides for the focus groups, and included items addressing financial security.
This study undertook a more focused analysis of the RFI and focus group data.The researchers (researcher 1 and researcher 2) began by more closely reviewing content that, for the previous study, had been coded to nodes relevant to the topic of this paper, which specifically included the following: • "Caregiver pay" This node incorporated comments that related to the view that caregivers should be compensated for their caregiving activities.
• "Inability to work" This node incorporated comments that discussed the relationship between caregiving responsibilities and the ability to sustain paid employment.
• "Retirement" This node incorporated comments regarding the impact of caregiving on retirement savings.
• "Staff quality" This node incorporated comments that discussed factors related to the quality of paid staff, and was further subdivided into "staff pay" and "staff training".
Data from these nodes were then further coded to the themes presented in this paper, following consultation among authors, and were applied to the focus group transcripts, using the same approach of thematic analysis.The results were then reviewed by both researchers 1 and 2 to ensure consistency across data sources.In the findings, responses from RFI respondents are denoted by their RFI identification number (responses were anonymous), preceded by "RFI."Focus group participants are identified by "FG" followed by the number of the focus group they participated in, and their gender as self-identified, numbered from first speaker.

Findings
Overall, the need to be paid for providing care was one of the strongest findings arising out of the data, with hundreds of RFI responses requesting that family caregivers receive some form of compensation.Frequently, respondents linked the need for pay with an inability to remain in the workforce, sometimes due to a caregiver's caregiving duties for multiple family members.In some cases, people weighed up the costs and benefits of staying employed, concluding that the economic benefits of remaining in the workforce were too low, and the non-economic costs (stress, for example) were too high, resulting in a loss of income.Respondents also cited the need to leave work because of the low quality or reliability of finding paid workers for in-home care.Respondents who left work to provide care reported considerable difficulty making financial ends meet, and expressed concern about their long-term financial situation, particularly regarding their lives in retirement.Ultimately, respondents expressed the view that payment for providing care was an issue of fairness, noting that their unpaid labor reduced government expenditures (by delaying institutionalization, for example).They also felt unfairly penalized by losing out on Social Security credits and/or the ability to contribute to future retirement savings through a workplace 401(k).

Theme 1: need for financial compensation
As noted, the demand for some form of financial restitution for caregiving work was the most prevalent finding in our research.Although this most often took the form of a simple demand for pay, respondents also mentioned various forms of tax credits or relief, as well as Social Security credits.One respondent said they needed "Money, because you cannot always work when taking care of a love one.Life cost money!!" (RFI-51) Another commented, "It would benefit me greatly if I could get some type of stipend from the government.I did take my retirement early so that I could stay with her." (RFI-65) Another respondent recommended Paid family member caregivers.My husband lost his job 3 years ago largely due to the responsibilities of caring for our son, and cannot find another position.We have lost over 50% of our income.At the VERY LEAST there should be a significant tax credit to family members who provide care.(RFI-1158) Another said, My recommendation is to expand the eligibility of being a paid family caregiver to include all family members.By allowing loved ones to be able to afford being the caregiver we will see improvements in the quality of care thereby improving health outcomes and decreasing costs of the overall healthcare system.(RFI-396) But overall, the greatest demand was for "Providing wages for the caregiver who had to quit their jobs in order to care for their loved ones."(RFI-1149) As one focus group participant said, I would say that if anything could be passed it would really for me, 90% of my trouble sleeping at night comes from financial worries, so any incentives.Somehow think of a way to pay for caregivers.I think that would be my wish.(FG-1F3)

Theme 2: inability to maintain employment
Respondents frequently reported an inability to continue working.As one said, "I couldn't work.I couldn't do both."(FG-5F3) They commented generally on the incompatibility of work and caregiving.For example, one said, You can't do this at work, and you can't do this after 5 p.m. when the workday is ended because now you are caring for your family member.The time that can be wasted on hold on the phone just waiting for help is ridiculous.(RFI-105) Things like doctor/therapy appointments and daily needs of the individual that come up unexpectedly are difficult to manage when employed.(RFI-241) As another recounted, "I was forced to resign from my position because my supervisor felt that I had too much on my plate" due to caregiving responsibilities.(FG-10F4).Another's recommendation was for Paid caregiving . . .My husband is a full-time caregiver to my mother in law who is bed bound and my son who has multiple disabilities due to a brain malformation.He can't work and my salary gets us by but barely.Our whole family is on Medicaid due to our low income level.One breakdown of the car or in the house and we will be in financial trouble.We could really use another salary to help us get by.(RFI-1088) Ultimately, as one said, "Holding down a full-time job in order to support your family, caring for your children, your spouse and your parent is just too much."(RFI-569) Another respondent commented, It's like holding three full-time jobs, I think.The nursing home people told us -the hospital said that I was doing what it'd take five people to do.They had to pay five people to do the job that I was doing 24 hours a day, seven days a week.Years.(FG-5M1)

Theme 3: weighing the costs and benefits of maintaining employment
Many respondents noted that the costs associated with having other people provide support meant that it was not "worth it" for them to continue working.As one commented, It was cheaper for me to stay home than it was for me to hire somebody . . .for the five days a week to take care of her than it was paying somebody and just taking the two days' pay and the health insurance at my employer than to do it the other way and hire somebody who could be there to work five days a week and have the two days off.(FG-4M4) Another went through her calculations, highlighting that there are few incentives for lower-income individuals to stay in work: Average per hour rate is $25 for interpreting, since I do mostly contract work.I pay $15 an hour to pay for care and then pay tax on this income, Also, need to account for expenses so at the end I make almost nothing after accounting for taxes and expenses.Sometimes the loss of work meant that the respondent could qualify for Medicaid, which had its plusses and minuses.As another respondent said, The family income as a whole being limited is a huge stress on an already stressed family.Yet, at the same time, in order to get much needed services, they may need to qualify for Medicaid, which would mean living below the poverty line.Doing so, and caring for someone with complex medical needs, is impossible at best.(RFI-1266) Respondents also remarked on the stress involved with remaining in the workplace.For example, one said, "Many family members have to quit their jobs or cut their hours to keep their sanity and health navigating through the hard journey of taking care of a love ones."(RFI-138) As one said, "I couldn't work.I couldn't do both . . .My mind wasn't in it . . . .I lost my career."(FG-5F3)

Theme 4: concern about the availability and quality of care provided by non-family members
A further factor driving family caregivers out of employment was the nature of the services that were available to support their care recipient, which were seen as poor quality, unreliable, or unsuitable in other ways.One said, "Cost, turnover and poor training are reasons many family members don't place their disabled dependents with others for care."(RFI-336) Some linked the poor quality of services with low pay in the direct care workforce: We also have a problem of quality care because they are paid terribly.My son and I, my family, is lucky to have a young woman who's worked with us for 18 years . . .Every year we go back to the legislature and say "Pay these people what they're worth" because they keep your individual with you.(FG-2F3) Caregivers of people with challenging conditions expressed particular difficulty in finding suitable workers: The biggest elephant in the room is the challenge of a workforce that can do the personal support work/direct support staff . . .I can't even remember the names of support staff . . .maybe 35 or more people in 4 years-and she has tried several 5 different home care agencies.Some direct support staff back out as soon as they step foot in the house, some last one day, some last a couple weeks, some quit unexpectedly and abruptly-without any warning.Of course, some respondents felt that the care that a family member provides will always be of better quality.As one said, I wish there was some way that families could be compensated in the same way Medicaid pays for nursing homes because I believe most people want to be with people that love them and are generally more attentively cared for by their loved ones.(RFI-1369)

Theme 5: concern about financial vulnerability due to inability to work
Respondents expressed enormous concern about how caregiving impacts their family's financial situation, their personal financial situation, and their financial future.One respondent commented, "I am unable to work because of care needed for husband 24/7.We will lose years of income and retirement is 15 years away."(RFI-280) Another recounted, My sister was financially broke because . . .she was the main care provider for both parents, and also cared for her own children.She died an early age, now I cannot say it was because of stress.However, I cannot say it wasn't . . .It must be addressed so that more personal care can be provided at home, by family members, and be financially supported by the same way as Nursing Home care.It is like I said, a Win, Win.Along the same lines, another commented, Ultimately, especially, for women like myself who have been caregiving for multiple decades . . . .by the time we reach retirement, we are starting with nothing . . .Because we have emptied our retirement accounts.Or we have left the workforce, so were not going to get the level of retirement we expect or anticipated, right?So, I hear from so many women who at the end of caregiving are in their 50s, maybe early 60s, they are wiped out financially.Wiped out.(FG-11F1) The worry about the how the loss of income impacts retirement -specifically, eligibility for Social Security -was pervasive: I would love to be able to have had my Social Security increase so that I'm not a burden to my daughter . . .that the hours that I spent taking care of my mom [could] lead to an increased Social Security payment-now then, that would be a lot more helpful to me at my stage in life.(FG-5F4) Respondents with 401(k)s reported having to tap into them for income: I had planned not to use my 401(k) until I was 72 because I had planned on doing parttime work and . . .having a supplemental income.But my mother took -it was 24 hours a day she lived with me . . .I really had to tap into my 401(k) for survival reasons.That has been a critical impact, financially.(FG-5F4) However, it should be noted that even among those who are paid to provide LTSS under Medicaid self-directed programs, eligibility for Social Security is affected.As one respondent noted, There is a problem with the Social Security system.A parent caring for an adult child and being paid through Medicaid personal care funds [is] not eligible for participation in the Social Security system.(RFI-1471) Theme 6: fairness And lastly, many respondents commented that it seemed unfair that they were ineligible to be paid due to their relationship to the person receiving services.Simply stated, one said, "If you take care of a permanently severely disabled person then you should get paid to take care of them."(RFI-226) Another said, No one should be faced with a Hobson 's choice of either sacrificing their livelihood to provide care for a loved one or deplete their life savings in order to provide adequate care.(RFI-1278) Some pointed out that their unpaid work resulted in cost savings more generally and that these savings -to government, in particular -should be acknowledged.One argued, I would like caregivers, who are saving Government many dollars by caring for our family members at home and not putting them in a public institution, be given financial recompense for their time.Consequently, We need an income stream that . . .ensures that no person living with a disability is at risk of placement because their family member can no longer afford to stay at home as their caretaker.Disabled people belong in society: in their homes, in their communitiesnot in institutions.The only way this can happen is by supporting the families, the caretakers, who are doing the real work in ensuring their disabled family members continue to remain with them in a financially secure environment.(RFI-319)

Discussion
Programs offering self-direction aim to maximize choice and control for service recipients, largely by enabling them to choose who will deliver the intensely personal services that they need.In practice, many end up hiring family members when they are able to do so.For example, data from California's In-Home Supportive Services (IHSS) program (the largest in the country, serving 565,000 people, and the program with the most reliable data on service providers) show that in November 2021, over 71% of service providers were family members (California Department of Social Services, 2021).
It is unclear, however, whether this heavy reliance on family caregivers is a genuine choice on the part of program participants, or whether it is a response to the glaring inadequacies of the existing paid workforce.The most egregious issue is the low supply of direct care workers, which -although currently at a crisis point -is a long-standing and ongoing issue, most acutely in rural areas (Scales, 2021).However, quality is another issue: for example, study respondents repeatedly voiced concern about the poor quality of the workforce, which they attributed to low pay and insufficient training.Family caregivers of individuals with complex needs were particularly concerned about workers' inability to appropriately serve vulnerable individuals, feeling that they were more competent and knowledgeable in responding to the care recipient's needs.Such concerns are consistent with wide-spread efforts to improve the work experience, training, and retention of direct care workers, with the overall goal of improving quality (Stone, 2017).
An awareness that the direct care worker crisis is unlikely to be solved anytime soon thus creates a strong argument for expanding the ability of HCBS programs to train, support, and pay family caregivers: family members constitute a ready pool of workers.It should be noted that one of the earliest findings of research on self-directed programs was that people who could hire their own workers were more likely to receive services than those who received services through the usual channels, simply because they had better access to workers (Dale & Brown, 2007).To expand supply during the COVID-19 pandemic, some state Medicaid programs have used emergency provisions to temporarily enable the hiring of relatives (National Academy for State Health Policy, 2021).Some observers even view paid family care as a longer-term means of increasing supply, regarding it as a potential entrée point for the profession (Simon-Rusinowitz et al., 2005).
However, findings from this research add another rationale for the expansion of such programs: the financial well-being of family caregivers.This research finds that family caregivers conceptualize payment for providing care as a critical part of their personal financial security -and, in many cases, as their due.As noted, this was the strongest and most consistent finding from the RFI analysis, one that was endorsed by focus group participants when the topic was systematically explored, with no noticeable differences among participant types.
Most often, this financial insecurity is due to the inability to work that results from assuming the caregiving role.As the stories recounted above demonstrate, family caregivers frequently find it difficult to remain in work, for multiple reasons; in addition to the workforce and quality issues noted previously, caregivers also talk about the lack of flexibility among some employers that impedes caregivers' ability to support the care recipient as needed.The intensity and complexity of caregiving tasks is another factor that has been found important in several studies (Mudrazija, 2019;Van Houtven et al., 2013).This study also finds that concern about retirement income is pervasive; it should be noted that this concern remains even among those who are paid to provide care, given low payment rates, as well as specific family exemptions for Social Security and Medicare deductions in the tax code (Internal Revenue Service, 2022).

Limitations
The study has some limitations, most importantly in the characteristics of RFI respondents.While focus group participants were carefully selected to cover a wide range of caregiving experiences and sociodemographic characteristics, RFI respondents were self-selected, limiting the transferability of the responses to a broader context.Although the RFI was widely publicized, respondents were restricted to those who were made aware of the solicitation (typically, through an organizational affiliation).However, given the triangulation of methods, where the results from the open-ended RFI responses were confirmed by the more carefully constructed sample participating in the focus groups, as well as the strength of the findings, the credibility, dependability, and confirmability of this research are high.

Conclusion
Overall, this study's findings highlight the intense concern that family caregivers feel about the perilous financial condition that their caregiving role places them in, and the extent to which they feel that being paid -albeit at the Medicaid program's low rates -would go some way toward alleviating that worry.Some respondents framed the demand for pay in terms of fairness -that they are doing a job that might otherwise be performed by paid workers, and are consequently saving the government money.The main conclusion of the study, therefore, is that expansion of self-directed services programs that enable the hiring of family members is a benefit not just for service recipients, but also for the family members who are being paid to provide care.

Key points
• Programs offering self-directed long term services and supports have become more available.
• In some programs, family members can be paid to provide care: this option is popular.
• Family caregivers report difficulties sustaining work and fears for their financial security.
• Family caregivers strongly recommend that they be compensated for providing care.
• Expansion of self-directed programs benefits not just care recipients, but family caregivers too.